News, Views and Analysis

Autism Funding in BC

Sometimes I think I should have called Crackle and Pop “Crash” and “Smash”. There are days when I feel like I’m hanging on to sanity for dear life and they’re stomping on my fingers.

As I’ve mentioned, All three of my kids have Autism. Crackle’s 5 years old and he’s non-verbal. He’s quite high functioning in some other respects though. He’s clever. Way too clever. For example, if Mom won’t open the back door to let him out into the yard, wait until she’s in the bathroom and then climb out the window. Childproof locks have nothing on him for the most part. And he gets bored easily, which is always trouble. Snap has Autism too, but she’s much higher functioning. She was diagnosed late (at 14). Before that, we knew something was up, but couldn’t get anyone in healthcare to listen to us until her little brother was diagnosed. Pop is a whole other story. He’s like a little Rain Man. But with a sense of humour.

There is no government-run Autism program for children. Rather, the government gives us each $22,000/year to buy our own treatment program for children under 6. Imagine if the government gave you $22,000 and said, “Go buy your own healthcare. We won’t regulate it except for that the person managing it must be on our list. And oh yeah, we grandfathered a bunch of unqualified ones onto the list. Good luck with that. And please kiss our asses for our generosity!”

With our 22 grand, we are to buy a Behaviour Consultant, a Speech Language Pathologist, and an Occupational Therapist. Those people almost invariably charge $120/hr. The Behaviour Consultant makes the plan that the BIs (Behaviour interventionists) follow. I love that they’re called interventionists. I always imagine them saying, “Crackle, your Autism is hurting the people around you. You must stop being autistic!” BIs can be anyone over the age of 19. There are no qualifications necessary. I shit you not. The plan includes all sorts of programs that help the child learn things that neurotypical kids learn on their own. Like how to play with toys, how to make eye contact, how to talk. Rather important things in the grand scheme of things!

Now here’s the kicker. I don’t have access to that money. The people I hire have to bill the government, who pays them out of my Autism account. When they get around to it. This is new. Before October 2009, when they shut down the government run program, we were also allowed to have access to our accounts, and pay our employees ourselves. When they changed it, they promised that the turn around time would be less than 4 weeks. HAH! Lying liars. Incompetent lying liars. A therapist I hired for Snap was paid after 4 months of harassing them. It’s gotten so that a lot of the SLPs won’t work with Autism clients because they know they’ll have to deal with runaround. And no, I am not allowed to pay them myself and have the money reimbursed to me.

When I buy supplies related to their treatment, I have to pay upfront and have them pay me back. So they recommend preapproval on everything. Which takes WEEKS. So if I want to buy Crackle photo flash cards, which inexplicably cost over $100, I have to send in an approval form, wait for them to process it and send it back, buy the stupid cards out of pocket, send them the receipt and wait for them to process it. It can take MONTHS. For flashcards! They do this so that we’ll just buy out of pocket and not bother. Pusbuckets. Oh, and there are tons of valid things they won’t cover. Like trampolines. Trampolines are recommended by OTs for helping people with autism gain core strength. Not covered. Period.

In the under 6 program, we don’t qualify for family counselling. No riding therapy. No swimming therapy. No music therapy. Nothing but the core stuff. Not that we could afford it anyway. $22,000 doesn’t cover even close to all the ABA treatment needed. Think about it. ABA therapy should be 5 days a week for at least 4 hours a day. That’s 20 hours per week at about $20/hr to a BI. $400/week x 52 = 20,800. The Consultant is required, and they charge $120/hr (I’ve seen as low as $80, as much as $160, but $120 is pretty standard). Call that $1200/year, and you’re done. No supplies, no Speech Pathologist, no OT, no PT.

So that’s how the under 6 program works. I’ll do the 6-17 program in another post.

I find it mindboggling that they get away with this. Autism is a health issue. But it’s supervised by the incompetent boobery of the Ministry of Children and Families. The shortsightedness of this program is appalling. If children with Autism get intervention (both ABA and biomedical - a whole nother can of worms) early, they will save the government millions, each. Literally. Because a kid with autism grows up to be an adult with autism. The lower functioning those people are, the more they cost the government in services. Cough up early and often, and they’ll save millions, per person with Autism, on group homes, respite care, etc. Not to mention, having productive members of society.

I posted this at my own blog some months back. I’ve updated as necessary. Because my husband may be transferred soon, I’m going to look into autism funding in other provinces. Stay tuned. And point me to resources if you know of them! I’m particularly interested in Alberta, Ontario, and Newfoundland as those are the most likely destinations. [shudder] Pray for me that it’s not Alberta. They’d lynch me in Alberta.